Emphysema by Steve Jensen
My Bottom Line: I’ve chosen not to quit golfing and fishing simply because these activities have ceased to be convenient or easy now that I have emphysema. You have a choice. You can keep moving or you can shrivel up and die.
Here’s My Story: My wife Nancy and I enjoy traveling, within the United States as well as internationally, and have done so for many years. Imagine our concern, therefore, when I was diagnosed a little over a year ago with chronic obstructive pulmonary disease. COPD is an umbrella term used to describe chronic lung diseases (such as emphysema and chronic bronchitis) characterized by increased shortness of breath. COPD is progressive and non-curable, though various treatments can improve quality of life for the patient. My specific diagnosis was emphysema.
Because it is known that COPD is progressive and non-curable, many patients who receive this diagnosis simply give up and wait to die. Neither Nancy nor I chose that option. I’m not certain on what to blame my having the disease but several factors seem to be obvious culprits: (1) my mother died of pulmonary fibrosis and, while I did not inherit that disease from her, I may have inherited a genetic predisposition; (2) I was serving in the Middle East during Desert Storm when the oil fields were burning in Kuwait; and, finally (3) I smoked cigarettes for thirty years. Despite having ceased smoking more than twenty years ago, my having smoked is, in all probability, to blame for my having emphysema.
Onset of Symptoms
My symptoms first manifested in 2011, while Nancy and I were attending the International Federation of Fly Fishers Fly Fishing Fair in West Yellowstone, Montana. The Fair was attended by several hundred people and I was conducting a workshop for those interested in learning how to build 3-D frames for displaying flies used in fly fishing, as well as associated art work. Extensive equipment is required for this workshop and I was experiencing considerable difficulty with breathing as I struggled to carry and set up the necessary materials. I had to ask Nancy and a couple of friends for assistance. As I continued to struggle, Nancy became increasingly concerned and finally insisted I go to a medical clinic in the area.
At the clinic, a physician’s assistant conducted appropriate tests and, based on the results, recommended that I leave the area at once. West Yellowstone is at an altitude of 7,000 feet which was interfering considerably with my ability to breathe. I did not feel good about bailing on the commitments I had made, so we requested a breathing treatment and Nancy promised that if I did not improve significantly, she would take me to the E.R. in Bozeman when we left the following day. My condition improved considerably in the lower altitude but the close call was something I recognized might have to be dealt with at some point.
From the incident in West Yellowstone to my being put on oxygen in August of 2014, the shortness of breath—particularly following exertion association with lifting, carrying, and climbing stairs—became more pronounced. Nancy finally insisted that I ask my primary physician to refer me to a pulmonologist. Following the latter appointment, I was put on oxygen immediately.
Oxygen for the Rest of My Life
When we realized I would be on oxygen for the rest of my life, the first thing Nancy and I did was to schedule an appointment with a respiratory therapist. My wife’s words to the therapist were, essentially, “This is not a sedentary man. We like to travel. He likes to golf, and we like to fish. It is our desire that Steve participate in life as fully as possible for as long as possible.” Nancy followed those comments with an example of the two-week trip we were scheduled to leave for just four days later, and then added, “Therefore, the best service you can provide is to tell us what supplies and equipment we’re going to need to rent and/or purchase to make this kind of lifestyle possible.” The therapist was very accommodating.
The bottom line is that once persons with COPD have progressed to the point of needing supplemental oxygen, they require access to that oxygen 24/7 for the rest of their lives. That need, of course, is a life-changing event. Supplemental oxygen is available through the following methods, and I will share my experience with each.
The first piece of equipment that was delivered—and provided by Medicare/insurance)–was a Stationary Oxygen Concentrator. It is bulky and noisy but also necessary as it not only provides oxygen through a 47-foot tube to allow mobility from room to room within our home, but it refills the portable cylinders required in other situations. Due to the size of this equipment, it is not portable and, therefore, does not support travel.
A second piece of equipment, the Portable Oxygen Concentrator, has several advantages: (1) it’s portable; (2) is can operate by being plugged into either an electrical outlet or into the DC power supply in your automobile, or it can run on a rechargeable battery. While most medical providers have access to these, and rent or loan them to their patients, the units are in limited supply so you are at the providers’ mercy in obtaining one. Nancy and I opted to purchase one in order to eliminate that constraint with regard to travel. The cost was about $2,000, and has proven well worth the expense. This portable unit weighs 18 pounds and is on wheels. If I am conducting or attending a workshop for the day, I can transport this concentrator in my SUV, then plug it into a power source near where I will be seated for the day and not have to worry about taking enough Portable Oxygen Cylinders to last an entire day. An additional advantage is that airlines allow the use of small, battery-operated Portable Oxygen Concentrators, provided the battery life exceeds the duration of the flight.
The Portable Oxygen Cylinders (available in various sizes) are the devices you see being carried by someone with a nasal cannula on a short tube. The cylinders are generally contained in a shoulder pouch or sometimes transported in a container on two wheels. Thankfully, these portable cylinders have allowed me to continue playing golf. Unfortunately, because they are highly combustible, they are not allowed on airplanes.
Difficulties of Air Travel
Air travel is still possible for those with COPD. It is important to take things at a slow pace, and to allow for frequent rest intervals. I enjoy fly fishing and it has been a major part of my life for many years. In fact, my enthusiasm for this sport has taken me to many beautiful lakes, streams and oceans in several countries, including New Zealand, Mexico, Canada, Belize and Honduras. Once I was introduced to salt-water fishing, I found I preferred to golf while at home and participate in “destination fly fishing” when away. Now, with my dependence on supplemental oxygen, some of these trips are still possible, while others are not.
In July of this year, a friend and I traveled by car to Canada, where we fished the lakes there in a boat. Although I was able to use the Portable Oxygen Concentrator during the trip to Canada and back, as well as in the cabin during the evenings and nights, the risk of water damage prevented my taking it in the boat. Rather, I was required to use the Portable Oxygen Cylinders while fishing. Having a traveling companion (whether spouse, significant other, or friend) who is able and willing to pick up the slack in carrying equipment, luggage, etc. makes all the difference to a traveler with COPD!
It appears to be very difficult to obtain supplemental oxygen in other countries. Recently I had a fishing trip scheduled to Belize. As stated earlier, the highly combustible, portable canisters are not allowed on airplanes. The Portable Oxygen Concentrators are allowed on airplanes which would have made the primary flights to and from Belize possible. The challenge was to ensure access to oxygen on other modes of transportation (ferries, small airplanes, and boats). Despite numerous emails sent in an attempt to figure out how to access oxygen while there, I was not able to get the necessary confirmation. A man who operates a dive shop in Belize thought he could get the name of a provider inasmuch as the dive shop is required to have medical oxygen cylinders on the boats. His contact, however, proved elusive. One with COPD simply cannot travel abroad without indisputable arrangements for the requisite oxygen. The trip to Belize, therefore, had to be cancelled. In order to get the airline to refund the price of my ticket, it was necessary for my physician to write a letter stating my need for supplemental oxygen, and that all things considered, he had advised me not to take the trip.
Finding Supplemental Oxygen Can Be a Nightmare
Over the past year, it has become obvious to me that unless I can drive there, travel outside the U.S. is no longer a viable option. Traveling by car allows transporting cylinders sufficient to ensure mobility but, even then, difficulties can be encountered. Finding supplemental oxygen on a recent trip to Oregon proved to be a nightmare. Figuring one per day, I thought I had taken enough cylinders with me. In addition, I planned to use the Portable Oxygen Concentrator when I was stationary and at night.
After arriving in Oregon, I discovered one cylinder was not full and I also was using more oxygen that I had anticipated. The length of time a cylinder will last is determined by the rate of oxygen flow, and that must be adjusted based on the activity level of the user. The minute I thought there might be a problem, I called an oxygen provider in the area. They said they could not even talk to me because I was not their customer. I called a second company with the same result. I then called the medical service in my home city to see if they had a reciprocal agreement with a company in Bend, OR. They did have and I called the company they recommended, only to learn that in Oregon, oxygen is a drug and one can’t obtain it without a prescription. My provider in Missouri faxed a copy of my script. Still, the reciprocal company would not fill my cylinders; rather, I had to rent cylinders, pay to have them filled, and then return them. Another problem is that when you’re not a regular customer, you are at their mercy with regard to what they charge you. I learned insurance companies will not cover oxygen from more than one provider so it was not covered by insurance.
Feeling that my travel is now limited to destinations to which I can drive, I’m thankful for the foreign travel experiences I’d had in the past. I can still fish and am planning a drive to Louisiana this fall where I can take my portable concentrator and cylinders with me. Despite not being able to do as much as was once possible, a person with COPD can still travel and do many things, provided extra time is allowed and a traveling companion is willing to assist as necessary. You don’t get over the aversion to asking for help, but it’s either that or stay home and do nothing!
My Golf Game
I play golf weekly with a group of guys who support me, help when needed, and are patient with me. Because of my portable oxygen, they will rake the sand trap for me, and will park the cart as close as they can. They even drive the cart into some restricted areas so as to minimize the amount of uphill and downhill walking I have to do. Note that I carry a size D oxygen cylinder in a backpack throughout my round and am attached to it by a cannula even while I’m swinging a golf club..
I would like to tell you that being on supplemental oxygen has had little or no effect on my golf game. But that simply wouldn’t be true. As my endurance has decreased, my golf scores have increased. Since being placed on supplemental oxygen, my handicap has gone up 8 strokes (not good!). But I still hit a few good shots and I really enjoy the round of golf with my friends, so the extra effort and the disappointing scores are worth it.
We all have a choice when we discover we have a debilitating illness. Quit? That’s not me. Make the best of it? That’s what I’m doing.